Tuesday, April 21, 2015

“The Spirit
Catches You and You Fall Down”* sounds like it’s describing someone getting
into bed after a full day of tripping acid. In Hmong culture, it translates to
“epilepsy”… *I was close*. For them, sickness is inextricably linked with the
soul; thus they have txiv neebs, or
shamans, who treat health issues by serving incorporeal needs and communicating
with ethereal beings, namely dabs. A
person could incur an illness if their soul wanders from the physical body for
whatever reason. They could have an ADHD soul that is distracted by something
shiny and floats away, the soul could be scared off by certain noises, the soul
could grow weary of its surroundings and bail, etc. If only I could use that
excuse at work and say that I must leave because my soul has decided it is
bored of my environment. There are certain rituals that help retain the soul
inside the body, but at the onset of sickness, the soul is the immediate
culprit.

The
particular case of epilepsy is complicated among Hmongs-- the seizures are
indicative of the individual’s ability to communicate with a higher realm. As
such, they don’t necessarily immediately scramble for an all-out cure. The
notion of epilepsy as an endeared bestowment of special powers is not purely
Hmong; epileptics like my boy Dosteovsky, Lewis Carroll, and Vincent Van Gogh openly
praised their disease for the surges of creativity that accompanied their
seizures. The idea of bits of “wellness” being embedded in an illness is lauded
by Oliver Sacks in The Man Who Mistook His Wife for a Hat. By the same token, epilepsy is also a severe
neurological problem that can lead to some serious shit.

Eastern religion and culture is so
mysterious and tantalizing to me, but sometimes Eastern-Western divisions seem
insurmountable. In a comical example, one time I dropped my phone and it was
taken to an MTA employee from New Delhi. When I went to retrieve it, he refused
to believe that it was mine because my phone background is a beautiful
depiction of my favorite Hindu god, Ganesha. We quarreled about it for quite
some time until I finally convinced him that white people could dabble in India
stuff too. As a token of goodwill and in order to encourage cultural exchange,
I recommended the NSYNC Christmas album as representative of America.

The
Lees—the family depicted in this book—have their world rocked as a result of
Eastern-Western miscommunication much more detrimental than me not having my
phone for twenty minutes. The parents, Foua and Ni Kao Lee, arrived in Merced,
California as Laotian refugees in 1980. Foua birthed an epileptic child, Lia,
in 1982. Lia was hospitalized numerous times and her doctors continued to note
medical noncompliance from her parents. Over time, the relationship between the
Lees and Lia’s physicians became frustrating as hell for both sides.
Eventually, Lia had an uncontrollable epileptic attack that left her in a
vegetative state for the rest of her life. At age four, she was pronounced
brain dead. So, who is accountable for this tragedy? Let’s look at both sides.

The Hmong
people have a negative perception of the American health system to begin with.
At one point, a panel of Hmongs in Thailand sincerely asked if “American
doctors eat the livers, kidneys, and brains of Hmong patients” (Fadiman, 32).
Of course we do, when no one is looking and we have barbeque sauce handy! But
truly, our practices stand in such stark contradiction to the belief system
inherent in their medicinal approaches. For instance, they believe that the
body has a finite amount of blood that it does not replenish; therefore, they
are weary of blood draws and operations involving blood loss. They take issue
with organ donation because it will interfere with their future reincarnation
as a complete being. The list goes on.

I think
it’s very easy to write off this line of thinking as naive or inept…but that’s
also very impudent. Fadiman consistently stresses that we are intransigent in
our own perspective; we hail our point of view as correct above all else. It is
the classic snare of ethnocentrism that keeps us from entertaining the possibility
that “our view of reality is only a view, not reality itself" (Fadiman, 276).
So, it is hasty to instantly devalue Hmong animistic shamanism at the
expense of Western medicine. You might disagree with me, but then you’d be
wrong (see what I did there?).

On the
other hand, the doctors at Merced Community Medical Center hit a brick wall any
time they tried to effectively treat Lia. They had no understanding of the
details behind Hmong reluctance to their method of care and extremely limited
access to adequate translators. Even when they were able to properly
communicate complicated dosage regimens to the illiterate, non English-speaking
Lees, they had no means of ensuring this was correctly adhered to at home. Surprise…it
was not. Furthermore, it was virtually impossible to discern whether the Lees
were defying their life-saving prescriptions out of stupidity, cultural
misunderstanding, or outright parental neglect. Ultimately, that led to the
involvement of child services and the Lees lost custody of Lia for some time. The
Lees, who were extraordinarily loving parents attempting to navigate the
unfamiliar world of Western medicine, were devastated and confused by the
state’s involvement. The doctors, who made it their mission to serve the patient
to the best of their ability, were horrified by the Lee’s homeopathic
insistence and the haphazard way in which they administered Lia’s medications.
After a while, “Lia’s case had confirmed the Hmong community’s worst prejudices
about the medical profession and the medical community’s worst prejudices about
the Hmong” (Fadiman, 253).

A startling
example of the culmination of misinterpretation, anger, and exasperation between
these two sides surfaced when Nao Kao was told that his daughter had just a couple
of hours to live (Fadiman, 178). This is already problematic for a Hmong, as
the explicit prediction of death is thought to encourage a dab to go ahead and pull the plug. Additionally, Nao Kao was asked
to sign some documents indicating consent that he was voluntarily taking the
patient home in critical condition. Indignant, Nao Kao understood the
hospital’s two-hour prognosis as a threat and thought that they were forcing
him to sign off on an agreement to definitively end Lia’s life. Frightened, he
abruptly ran away with Lia in his arms, setting off an emergency “Code X”
throughout the hospital. Nao Kao did not want his precious daughter to die
because of the doctors (of note—the Lees thought that Lia had succumbed to this
state because the doctors had given her too much medicine).On the other hand, the resident on the case
at the time was finishing up a 33-hour shift and was not trying to put up with
any of Nao Kao’s bullshit.

So, we’ve established that the Lees
have a tenuous relationship with the hospital at best and Lia suffered as a
result. But it’s not like anyone here was maliciously trying to deprive Lia of
good health. I started to ask myself some hard-hitting questions that emerged
from this painful situation. Should doctors give a patient suboptimal care and
cater their therapeutic regimen such that the patient’s caregivers are more
likely to comply? What constitutes discriminatory practice and how far should a
doctor tailor his approach in light of the culture at hand? Where do parental rights
and child rights start to clash, and when should the government get involved?
What kind of reasonable culturally sensitive expectations can there be for
doctors who already require so much schooling? How much stress can they be
asked to endure when it comes to dealing with opposing cultures and subpar
cross-cultural resources? How much assimilation should we mandate before it
actually becomes a submergence of their culture completely? This is a book club
GOLD MINE, you guys.

At the end of the day, there’s a
bottom line: Lia is a vegetable. We’ll call her an asparagus because I really
like asparaguses as of late. I found myself getting a little worked up at times when
I wondered if I respect cultural values at the expensive of life. My answer is
a resounding: no. But there were
better ways to handle this predicament—something which Fadiman hopes to shed
some light on. Of course, hindsight is 20/20, but we can learn something about
the benefits of conjoint treatment—an approach that in this case would
integrate shamanistic and Western practices. Heal Lia’s body and her soul. The prospect of a
“consensual reality” is not totally infeasible (Fadiman, 95).

Not only did I think Fadiman was an
absolute boss in carefully elucidating Lia’s medical progression and giving a
balanced account of the justifiable frustrations of both sides, she also
seamlessly integrated an elaborate lesson in Hmong history. We’ve all learned
about the highly publicized Vietnam War, but I know no one, including myself,
who has heard about the concurrent war in Laos pointedly dubbed the “Quiet
War”. The United States C.I.A., troubled by communism embodied in the Pathet
Lao, backed the Royal Lao by recruiting thousands of American-trained Hmong
soldiers as proxies. There was a repeatedly guaranteed “Promise” involved in
which the CIA assured the Hmong that their fighting was not in vain (Fadiman,
201). If the Pathet Lao emerged victorious, the Hmong would be abetted and
granted American refuge; instead, when the commies won, the United States got
the hell out, leaving behind the very men they had sent to battle on their
behalf. The Hmong were slaughtered by the thousands. The ones who did manage to
survive fled to Thailand—an unfathomably dangerous and trying journey.
Gradually, the remaining Hmong were filtered into America, mainly in the 1980s.
Now, having lost every single possession and many family members/neighbors
along the way, the Hmong come stateside and are blamed for gobbling up welfare.
Rather than being grateful for their service, we’re criticizing them for their
lack of immediate American self-sufficiency. It’s akin to the veteran-homeless
problem. We’re assholes.

And welfare is certainly a factor
in this book. The Lee’s situation is complicated by the fact that they could
not afford to pay a single penny for the hundreds of hours of healthcare that
was necessary for Lia. Not to mention Foua birthed seventeen children. Again,
this book is a wellspring of discussion topics—power dynamics in the medical
system, the cyclical nature of limitations for the poor, the structure of
welfare programs, veteran aid, etc.

Overall, I was incredibly impressed with Fadiman’s
presentation of such a heartbreaking event. She seems invested in the story—it
took her eight years of research—but she also successfully surfaces all of the
facts and the range of point of views. Everyone was trying to take care of Lia
in the best way they knew how and I now feel that it’s unwise to categorically
say that medical treatment trumps cultural beliefs. At the same time, I’m not
one to wholeheartedly espouse cultural relativism. Moreover, this book taught
me what it is to be human and understand others in their humanity. A Western
“encounter with the Hmong is a confrontation with radical difference—in
cosmology, worldview, ethos, texture of life…Unfortunately as [the French
critic] Tzvetan Todorov reminds us, ‘The first, spontaneous reaction with
regard to the stranger is to imagine him as inferior, since he is different
from us’” (Fadiman, 167). Fadiman takes these weighty reminders and grounds
them in a story that is both relatable and baffling. The cultural barriers were
simultaneously shocking, entertaining, and understandable. For instance, Foua
admits that prior to America, they had “never seen a toilet before and [they]
thought maybe the water in it was to drink or cook with” (Fadiman, 182). These
little snippets of Hmong perception alone earn the book 5 out of 5 camel
humps, not to mention Fadiman’s ability to educate without maintaining that
she knows all of the answers.

*Fadiman, Anne. The
Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and
the Collision of Two Cultures. New York: Farrar, Straus, and Giroux, 1997.
Print

Wednesday, April 1, 2015

Let’s get
some nonfiction into the mix, shall we? Oliver Sacks’ The Man Who Mistook His Wife for a Hat* is not all about one man
who thought his wife resembled a fedora (although that sounds like literary
gold). Rather, it is a collection of case histories that Sacks, an esteemed
neurologist, has recorded over his fifty-plus year practice. It is split into
four parts: Losses, Excesses, Transports, and The World of the Simple. The
first two sections are concerned with so-called “deficits” or hyperactivity. The
“transport” chapter deals with atypical stimulation of specific brain regions
that leads to perceptual hallucinations. The final portion refers to the
“mentally defective” (patients with low IQs, autism, etc.).

Sacks is
interested in the human condition as a whole; a diseased person cannot be so
easily parsed that their identity is unaffected by their illness. That is not
to say that one becomes an entirely different person as a result of their
diagnosis. Simply, identity and illness meet, interact, and transform each
other. He emphasizes that there is a person beyond the disease and that
treating that person entails much more than just addressing the physical.

Consequently, he has a real problem
with a purely rigid, systematic approach to medicine. He maintains, “Empirical
science, empiricism, takes no account of the soul, no account of what
constitutes and determines personal being. Perhaps there is a philosophical as
well as a clinic lesson here: that in Korsakov’s, or dementia, or other such catastrophes,
however great the organic damage and Humean dissolution, there remains the
undiminished possibility of reintegration by art, by communion, by touching the
human spirit: and this can be preserved in what seems at first a hopeless state
of neurological devastation” (Sacks, 39).

It’s a
beautiful thing—he really believes in
his patients. He fights for them to gain control of their symptoms AND grapple
with the psychological side effects. Many of the cases demonstrate a triumph of
will, as the patients turn inwards to find creative ways to cope with their
physical limitations. Several patients teem with innovation. For example, Mr. MacGregor creates a custom pair of glasses with a level (like one used in
carpentry) extended from the rims to help him walk straight, whereas beforehand
he unknowingly strutted with a noticeable tilt (Sacks, 75). Here is where
identity and illness converge, as patients strive to assert themselves in the
midst of their condition. “He may be faced, from early childhood, with
extraordinary barriers to individuation, to becoming a real person. The miracle
is that, in most cases, he succeeds—for the powers of survival, of the will to
survive, and to survive as a unique inalienable individual, are, absolutely the
strongest in our being: stronger than any impulses, stronger than disease.
Health, health militant, is usually the victor” (Sacks, 125). One cannot help
but think that his own words are applicable to his current plight, as he
recently announced that he has terminal cancer (My Own Life).

As a whole,
this book surprised me with its brooding, existential undertone. Some patients
suffer from diseases afflicting their memory capabilities, so Dr. Sacks makes
some unscientific inquiries as to the relationship between memory and soul,
i.e. how one’s personality might be affected by the lack of a continuous stream
of memories. What remains of a person who has lost some (or even all) sense of
reality? At one point, he asks the nuns at his hospital if it was “possible
that [the patient] had really been ‘desouled’ by a disease” (Sacks, 37). Talk
philosophy to me, Dr. Sacks.

Furthermore,
he encourages us not to look at illness and wellness in such a binary
framework. He encounters numerous paradoxical situations in which some patients
find that their so-called “illness” actually provides them with a benefit… so
much so that they do not wish to be treated. Could an illness have a healing
power? Intrigued? *You’ll just have to read for yourself*

I find it
quite remarkable that he is so bent on restructuring the medical perspective so
that patients might fully flourish. Still, this book confuses me a little.
Perhaps I’m breathing words into Dr. Sacks that aren’t true, but I feel as though at
its core, this book is meant to be accessible to the layman; yet, he is still
an erudite professor…and it shows. There is nothing wrong with sounding
scholarly as a scholar, but I think that it complicates the voice of his book.
I wonder if the formality of his writing interferes with his ability to paint
his patients as truly human. And isn’t that his whole point? He cries out for
medicine that incorporates meaning—a flexible practice that acknowledges the
existential—but crams his book with a pretentious air and jargon that distracts
the reader from envisioning the patient in this holistic way. As a result, I
think I like him very much as a person and a doctor—not necessarily a writer. As
an aside, he is allegedly celibate, which is funny insofar as Dr. Sacks isn’t
getting any in the sack.

That being said, the cases he
presents are wildly entertaining. One man literally tries to pick up his wife’s
head, confusing it with his hat due to his visual agnosia (Sacks, 11). A
medical student gets amped up on a bunch of drugs (cocaine, PCP, amphetamines)
and then is left with an outrageously keen olfactory system for weeks (Sacks,
156). If this makes you want to do PCP, check out what happened to Big Lurch. In a later chapter, autistic twins each shout the number of matches
that fall out of a box the instant it hits the floor—111 matches (Sacks, 199).
The book is abound with truly fantastical stories though some are communicated
too obliquely; thus, my review balances out at a cool 3 out of 5 camel humps.

*Sacks, Oliver. The
Man Who Mistook His Wife for a Hat. New York: Touchstone, 1998. Print.

*Sacks, Oliver. “My Own Life: Oliver Sacks on Learning He
Has Terminal Cancer.” The New York Times.
19 Feb. 2015. Web. 1 April 2015.

Search This Blog

Lyndsay West

About Me

I’m a 25 year old lover of reading and writing. I was born and raised in Dallas, Texas, and I graduated from the University of Virginia in 2013. Currently, I live in New York City making my writing mark on the world via freelance work. Other interests include religious studies, philosophy, psychology, dancing, and live music.

Follow my twitter: @humpdayhardback

*Words underlined/highlighted in red are links to websites with more info on the topic.